Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Like you I was worried beforehand.. but found there was no need to have been.
I had a picc line when I was having my treatment. They couldn't tell me if it was going to be a picc or a hickman until I got there for some reason that I cant remember now.
The picc line was a doddle.. no pain, no stress.. easy.
After looking at my veins with a scanner type device I then was given a bit of local anaesthetic (usual slight sting) and then a small incision was made in my upper inner arm.
They fed the tube in slowly. Didn't feel anything. Sent me for an xray to check position. Came back for slight adjustment.
All done. Stayed in for the next 7 months with no issues. Came out very easily. Made life so much easier for me I wished they had done it right at the beginning of treatment.
I am sure someone will be along regarding hickman lines shortly.
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Good morning to Mark MarkyMark100 living in stress city....... wuss lol
Central Lines are amazing things. How they ever came up with the idea and found people to try it out on - I just don't know.
I had one PICC Line for my main chemo and that was over and done with in 15 mins, a little sting numb the area and is was done and I had no problems with it during the 4 months.
Over my two Allo SCTs I had 4 Hickman Lines - 2 each for my two Allo SCT. They would not trust my stem cells with a PICC but other units have no problem with using a PICC.
The main reason I had two each time was one was not working 100% and they did not want to risk my precious brothers cells and the second time I got an infection in my third line.
Honestly......... I would have multiple Hickman Line put in before another BMB. This is a total mind game as it is treated as surgery but honestly - hand on heart, its a few stings from numbing the areas and a little pushing and that is it. It took about 30 mins and apart from the function and infection issues I had with them, I had them in for a total of 6 - 7 months.
The great thing is that the need for needles put into your arm is reduced, it won't take them away completely as at various points bloods can't be taken from the line as its being used for treatments or fluids, so you will not escape from needles completely but it reduces this down greatly.
As you will have lots of clinic following your SCT the flushing and dressing of the line will normally be done at clinc once a week by the nurse team.
You will do great.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thank you Paul and TheHighlander for the excellent advice. I won’t be so worried now.
My only question is you both stated you had it in for approximately 6 months. What the hell is that all about lol Don’t you have it taken out after leaving hospital for the stem cell transplant.
Is it that you both were in a long time?. They told me that if all goes well I could be out maybe in 3 weeks. I see that you had your siblings cells. I was talking to someone at the hospital and they were telling me about SCT from donor and they said they deemed more in depth and serious than the auto I’m having.
Did you come home with it still then ?
Hi Alice, some great help from Ally and do hope that this is helping you along the bumpy road.
As Ally has said, recovery post SCT can be so different for every one. I sailed through my first Allo SCT and had no recovery issues, but for lots of reasons it did not work. The second Allo SCT was always part of the big plan.
The first SCT was a newish method of treating my skin Lymphoma so it was always going to be 50/50 if it worked. I have meet with a lad at our local Maggie's Centre who has the exact same condition (1 in 200,00 chance) and he us getting the same treatment I had for my first Allo back in mid 2014...... but they will have learnt lessons from my first 'go' so I expect his Allo to be more succesful and still expect his post SCT recovery to be relatively good.
My second SCT was full on - a last throw of the dice thing (but years on there are other options on the go) Before I left the SCT Unit after my first Allo, my head SCT Consultant told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training......... as my recovery was great I thought "look at me!!"
But following my second she was correct and my recovery time was rather long as I did develop some issues that help me back........ but it worked and I am in remission from a condition that I was told I would never be in remission from.
I have posted this picture before but I think it sums up the SCT journey
Hi Mark, so last question first.
A donor SCT can bring more problems as it is just like any organ transplant as your body does its best to 'kill' the alien that is now living in your body.
So for the first 100 days post Allo SCT you are on Immunosuppressant drugs, a class of drug that suppress the strength of the body's immune system. Some of these drugs are used to make the body less likely to reject a transplanted organ, such as a liver, heart, kidney and yes, Stem Cells. These drugs are also called anti-rejection drugs.
I was on Cyclosporin for the first 100 days and it was rank, the smell was unbelievable and they were big capsulas The main thing that is looked for is developing GvHD where the body basically try to kill the Stem Cells so the Immunosuppressant drugs are like the referee in the battle. At day 100 you have a Chimerism Test and Bone Marrow Biopsy to see how things are going and if progress is being made this drug is slowly reduced and the real for supremacy starts.
A good question about the length these line were in and I did aske my team in the early days.
My PICC line was taken out 15 mins after my main chemo was complete........ but I was going to get a Hickman put in 4-6 weeks later.
Post Auto and Allo SCT you will have a lot of clinics where lots of blood tests will be done, your counts may well not recover quickly or even drop through the floor so some help using blood transfusion and platelets are often required. A high percentage of folk post SCT develop infections so may end up in hospital having IV Antibiotics so it is best to leave the line in for a period of time 'just in case'
Keep your questions coming.
Hi Mark! I am on my third Hickman line, first was put in September 2018 for my chemo and that stayed in until May this year where a skin contaminant meant they had to swap sides the line was in, and then an infection in the second line necessitated this third one. I had my transplant 1/02/19 and like you've said was out in three weeks. Keeping the line is a judgement call as for the majority of patients going through transplant, peripheral access can be quite poor as chemo and radiation cause your veins to thin and become weak. A large percentage of patients will need ongoing IV treatments after their transplants like blood transfusions and platelet top ups.
If you end up unlucky like myself, your Hickman line is needed for GVHD treatment (ECP) or weekly magnesium and potassium top ups. As you receive lots and lots of blood tests in the months after transplant, poor veins might mean keeping your line in to make this less traumatic for you because your transplant team will certainly require weekly bloods, sometimes its twice weekly or more. Every unit is different as any line in your body is obviously a possible source of infection, but sometimes it's the only way to get things in and out of you so the benefits outweigh the risks.
Hi Mark I can only give you my experience but it was quite easy & straightforward. Really experienced staff who chatted whilst hickman line went in & put music on. Just felt slight tugging feeling. It was good as it avoided having loads of needles. They can house an infection which mine did but removal & new line was no big deal. They have to highlight what may go wrong but these things are really rare. See it as 1st part of saving your life. Easy for me to say as I am not facing having it done but it really was a smooth process. Good luck with your journey
Thank you everyone for your advice, not long now until I find out. I will keep you all in the loop. I think it’s going to be w long very boring stay
hope the line is all done and dusted and you’re wondering what all the fuss was about?
Daughter found it felt odd and a bit sore for the first day or so when she moved her head but it soon settled and she never had any problem, either time. Getting it removed after her auto was a pest, that was in a general hospital with relatively inexperienced staff, but after her allo it was out in a jiffy, but that was after it had been in for a longish time too.
Sorry for the delay in replying, been away this week, so sorry this may be after the horse has bolted. Re: PICC line, how honest do you want me to be? I didn’t find it painful at all, but found it unnatural and unsettling, so much so the second time I nearly fainted. Never fainted in my life, but I got this strange warm sensation rising up my body and very nearly passed out. But the nurses were great and I was settled very quickly. I know what it was that set me off, it was when they said, “oh no, it’s going into the neck”. I am so squeamish around needles and blood, and (too much information) I lose about a stone in sweat every time I go to the hospital, so it was a completely unnecessary overreaction!
But when it is in, PICC lines are amazing - no more needles and the whole process of bloods / treatments is super easy. You’ll only need one in whilst you are having regular treatment / bloods - with the auto, I only had it in for about a month, with the allo it was over 14 months, but I did have a fair few complications. After that length of time, I actually got quite attached to it. In fact, quite literally, funny story, the day I was having it out on the day ward, a guy a similar age to me was sat across from me waiting to be called to have his put in, and he was really nervous about it - I said not to worry, it’s not painful, been really easy, etc, etc, and then when the nurses came to pull it out, they couldn’t, the skin had grown over the entrance! Three nurses came and went, each failing to get it out, until someone in charge came along with what looked a bit like industrial pliers, tugged and tugged at it until it popped free. When she had gone, all I could see in the guys eyes were “you complete liar!”
Here’s hoping it’s all gone really smoothly for you.
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Thank you Gregg and everyone else that’s kindly written to me about this.
The horse has not bolted yet so to speak I go in on 2nd Feb for it and that’s the first thing on my itinerary. To have that put it.
i will update you afterwards but like yourself I don’t mind admitting I’m a wuss. Even when having a blood test I try to slip something sugary so I don’t pass out. I do t think I will be able to sip anything with this.
Thank you all again. Jeez what a thing to worry about eh, they tell me I have a non curable cancer so to speak and I worry about a chuffing pic line ha ha. I suppose while I’m worrying about that I’m not thinking of anything else.
Thank you Ally that is extremely helpful. At no I'm halfway through matrix cycle as inpatient. I'm due for stem cell around November time as I have another 2 cycles of RICE and matrix to do
Hi Alice, I also had MATRix chemo so you are probably used to the whole neutropenia thing and also being in a hospital room. One thing I would add is that the transplant really messed with my internal heating system so be prepared to wrap up warm as you are having yours in winter. Hope all goes well and if you ever need to talk just message me. Ally x
Ally Mrs_A could you go to the bottom of your post, hit more then edit and remove your phone number as these Forums are open to the world.
You can always send a friend request then use the Direct Message System .
I think I’ve done it!
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